Voices of Autism: A brother’s perspective

This blog post is by Andy Shumaker. His brother Matthew has autism. Andy is a graduate of Yale University.

My brother doesn’t like me very much, and I don’t blame him.

It’s not that I’m a bad person, or that I don’t treat him nicely. It’s not that he’s unfriendly. I think it’s just hard to like someone who’s a lot luckier than you are.

Matthew was born a couple of years before I was, but somewhere along the way I became the older brother. I think I started speaking more than he did early on, not that we cared at the time. But as we grew older, the milestones started to matter.

The driver’s license was a big one. In east bay suburbia, it’s a given that on your 16th birthday you go to the DMV and take the test. It’s all you talk about when you’re a sophomore in high school, and when Matthew was that age, he probably heard about it every day when he walked alone through the halls.

He would talk to my mom about how excited he was to get his license; she would try to disabuse him of this illusory desire as gently as possible. But he was adamant. He wrote his name in Sharpie on my mom’s license plate. One time he got in her car and, instead of backing out of the garage, put it in drive and drove through the wall.

I, the neurotypical one, got my driver’s license on my 16th birthday, when Matthew was 18. According to Matthew, though, I wasn’t allowed to drive. I was younger than he was, so it made no sense for me to have rights that he didn’t.

When I needed to drive somewhere and Matthew was at home, my parents would have to drop me off at the end of our street before walking back home.

Matthew knew what was up, and he would give me a stern warning about the dangers of driving the next day. Whenever he caught me trying to sneak out of the garage, he would run out and scream at me.

Things have changed since then. After he got over the screaming thing, he displaced the driving ban onto Michael, our next-door neighbor who is Matthew’s age. This went on for a few years– when he saw me driving, I would have to roll down the window, and he would tell me that Michael wasn’t allowed to drive, to which I would always agree before going on my way. Today, after seven years, I’m allowed to drive, but not if he’s in the car.

Matthew can drive, if he feels like it. My dad drives him to the parking lot of the church near our house. Then they switch seats, Matthew drives in circles, and my dad’s hand rests on the emergency brake.

But it’s not just about the car. Matthew and I don’t really get along when we’re around the house, and I think it all has to do with jealousy.

I am very lucky.<Matthew knows that I have no trouble making friends, and he knows that I have a girlfriend. He knows that I’m more independent than he is, and that I go to college.

Sometimes I accidentally beat him when we play video games together.

If I enter the room when he’s not in the mood to see me, he comically turns and shields me from his presence, essentially giving me the most literal version of the “cold shoulder” I have ever seen. I’m not allowed to pat him on the back without permission. When he apologizes to me or says something nice to me, it’s usually because my parents have made him do it.

The good news is that things are getting better all the time. The breakthroughs are gratifying.

Our most recent visit to my grandfather’s house in Carmel was a big one.

I got back from the beach a half hour before we were supposed to drive home. Matthew was sulking on Grandpa’s bed, and I asked him what was up.

“I really want to go to the candy shop all by myself but my mother won’t let me,” he said. There is a little shop on Ocean Avenue where Matthew likes to buy jelly beans.

“Well, why don’t we go together?” I ventured.

“I don’t know,” he said hesitantly.

“Come on, let’s go.” I said it forcefully. Matthew sighed.

“OK.”

He must have really wanted those jelly beans.

So we set off down the street toward Ocean Avenue. He even tried out some conversation starters that I hadn’t heard before.

“So, how’s it goin’?” he asked in a rather nuanced, jocular tone.

I told him it was goin’ great. Told him I went swimming in the ocean.

“It must have been cold!” he said.

After our first few exchanges, the trip to the candy shop was pretty quiet. Matthew likes to think when he walks. I like to think that he was thinking, among other things, about jelly beans, and about how his younger brother isn’t so bad after all.

The trip to the candy shop was a good breakthrough, and when you have a less-than-satisfactory relationship with your autistic older brother, you take what you can get. I think it will keep getting better as we grow older, and I hope his jealousy will fade in some ways.

Like I said, I don’t blame him if he doesn’t like me. It’s hard to like someone who’s a lot luckier than you are.

I just hope that some day, he realizes that one of the luckiest things that happened to me was him.

Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.

Wow, this was very emotional for me. Thank you so much for sharing. I have 4 yr old twin girls, 1 with Autism and you’ve made me think about things I wasn’t prepared to think about yet, but at the same time it’s a good thing. I need to plan for these types of encounters and issues that may arise. You’re a great brother and I’m sure Matthew knows it although he may not really know how to tell you that. Many blessings to you both!

Thank you for such a wonderful story. I often felt guilty for being the “normal one”. I miss my brother terribly, he past on June 5, 2010. He was 57 years old. The doctors said he was the oldest autistic person they ever had seen. I have so many stories about growing up with my brother (oldest of 5) but his death is too new and I am very emotional. I loved your story!! :)

That made me cry. My younger daughter has become the big sister as well. My girls are 6 and 9. I am glad that Rileigh is not jealous of Tootsie. Rileigh is severly autistic, and for now she just sees Tootsie as another person in her life that can help her. She is frustrated by all the things she can’t do, but doesn’t seem to question her lot in life. You are such an amazing brother. Your older brother is lucky to have someone so understanding and generous. I feel like Tootsie is a better person for having Rileigh in her life. Dropped into any situation, she will stick up for classmates, and is so concerned with everyone elses feelings.

Awesome perspective!!! Nice job, Andy. Not an easy road for you to have a brother with such a mysterious diagnosis!! I have a son who has autism..he’s definitely a blessing to our lives, as well!! We also have a younger boy, who looks after his older brother in such a neat way..he’s only four, and his big brother is 8. So sweet to see them interact, and “talk” even if our “Cam” doesn’t say anything. I imagine someday we will all hear this type of perspective coming from our younger boy, too. You have given me hope that all will be okay.
Thanks for sharing, and for being such a blessing to your brother!! It takes all of us to help others be successful in life. Take care…

THIS WAS A BEAUTIFUL STORY IT BROUGHT TEARS TO MY EYES MY YOUNGEST WAS DIAGNOSED WITH AUTISM ON 10/2009. I HAVE TWO OTHER KIDS THAT ARE OLDER BUT THEY ADORE THERE LILTTLE BROTHER MY SON HAS LITTLE SPPECH SO IT’S HARD TO HOLD A CONVERSATION WITH HIM

“I just hope that some day, he realizes that one of the luckiest things that happened to me was him.” I relate to that .. totally!
LOVED this post.. and I hope you will support your brother all the way.. no matter how hard it gets.. As I am supporting my brother :)

This story choked me up. I have boys that are two years apart, ages 3 1/2 and 1 1/2, and my oldest has autism, while the younger one is neurotypical. My oldest son already gives his brother the cold shoulder. It’s refreshing to hear your outlook on it. Thank you for sharing your story.

God bless Andy, because he was able to recognize, and accept that his brother, Michael was different, that he made some situations difficult . . . that his brother was autistic, but Michael was his brother.

Dear Andy – your story is universally moving and touched me. I am the mom of 7 kids – and though none have autism, we’ve struggled in other ways. My husband recently passed on, and I think you will enjoy this song written by our oldest son, Jon. He played it for David the day before he passed, on Father’s day, and Mike (the other son) was able to record it. He had just written it, so he stumbles over the lyrics at one point, but it’s so beautiful I had to share it with you!http://www.silverplumeinkwell.com/JonsSongforDad.html
God Bless you,
Ruth

My 5 yr old son is autistic. I tell the children in my family’s life who inquire, “What’s wrong with [son’s name?]”, that his brain works differently to yours. He’s not stupid or doesn’t understand, he just understands in a different way. He can still play with you if he wants, but he probably will just want to play near you. Treat him the same, and talk to him the same, but sometimes he will want to do different things, and will answer in a different way. I do admit, that being non-verbal, and hence learning sign language, has reinforced this even more for those children, but I also admit, those children who have grown up with my son are some of the most compassionate and tolerant children I know.

I know five different families with an autistic child. One is the older brother with autism. I wish I had their e-mail to send this to their Mom. God bless you for the love and understanding you have over the years.

Such a great story. Your are such a wonderful brother. This definitely had me in tears. My girls are far apart in age my oldest will be 13 next month and is on the spectrum. Her little sister is almost 4 and this sounds so familar, My oldest will laugh and just stare at her very outgoing neurotypical sister and say “wow how does she know that” or “she acts like a teenager”. My neurotypical daughter is so emotional and loves her big sister so much. I always have to tell big sis “now tell her you love her too”. It breaks my heart and I hope that little sis will just continue to tell her everyday she loves her without hearing it back like we do. Not an easy journey for you as well but you are both lucky to have each other. Know that he really loves you so much even if you don’t hear it as much as you’d like.

This was such a beautiful story and thank you for sharing it. I choked up when I read it because I have a 6yr old with autism and a 2yr old. The 2yr old does not realize his older brother has autism yet, they play together very well. My oldest son is verbal and it took him a while, but now he is actively playing with his little brother and making connections. I know you have had so hard times with Matthew but you are such a wonderful brother to understand that he cannot help how he feels and what he does. God Bless you Andy for being such an amazing brother. Again, thank you for sharing your story.

Thanks for sharing your story. It brings tears to my eyes. Glad your so understanding of you older brother. My daughter is 15 months younger then my son. They are 11 and 10. I will have to wait and see what happens in a few more years.

Hey Andy what an awesome post. I have a 2 sons and my older son has Down Syndrome. I am definitely going to send my younger son a link of your post. What a fantastic read. Congratulations to you for supporting Matthew, you both have been blessed to be part of each others lives. May you continue your bond of brotherhood and keep us inspired with your posts.

Hey Andy, that was awesome!!.. I have 2 kids one with autism and they have a great relationship as well it’s nice to see that someone else in the world goes through the same thing and appericates their siblings. Your awesome.

Thank you for your story. It was nice for me to hear from a siblings perspective. My son has Autism as well as other neurological issues. My daughter is ten years younger than my son and she has been his big sister since she was about five. Life has has often felt like a roller coaster ride on a lose track but we’ve had wonderful times and we were able to build remarkable memories. My son doesn’t understand this but in many ways he’s my teacher and I’m a better person for having him in my life. I hope your lives together will be rewarding.

As an older sister of a brother who has autism, I feel I can relate in some ways to your experience. It can be hard sometimes, but you see the talents of the person no matter whether that they have a disability. Sometimes I do feel sad that my brother, even though he is 19, still has yet to feel so independent and go out by himself. Usually he is dependent on me and my boyfriend, or our older sister. But we try very hard to teach him as much as possible, and gradually he is getting there.

Your story is so wonderful to read and very emotional.
Keep up with being a great brother to him.

You wrote an amazing story that made me fight back my tears. My oldest daughter of four children is autistic (28yo). Although she has a bachelors degree, she cannot drive. She has since accepted it as her younger 2yo brother and I take her wherever she needs to go. It’s funny when I think of them growing up because I remember when she used to treat him as coldly as a stranger until he was about 5yo and then out of the blue, everything he did was so funny and cute to her she would just crack up and laugh herself into hysterical tears. It was like we brought him home from the hospital and she found out that she had a younger brother who was 5 yo..

This was emotional and beautiful. I love your description and the tone used throughout the piece it was very– this is how it was– at times it seemed as though you did not entirely understand why you did some of the things that you did. However, at the ending of the article, it all came together nicely making a beautiful and inspiring read. BRAVO.

I work with many children and adolescents in the autism spectrum and with their siblings. I also work to educate professionals about these wonderful people. This is an awesome tribute to an older brother.

Thank you for this blog. My son is 47, has a learning disability and Asperger’s Syndrome. What you wrote reminded me of when he was in his teens and watched his younger sisters progressing in a way he could not, but like you, we all feel very lucky that he is part of our family.

I am autistic and my sister is not. I wish my sister would acknowledge her privilege over me… She thinks I’ve chosen a more difficult life than hers… but I’m terrified that she secretly views herself as the older sister. She is allowed not to care. I never was.

I have been lurking about the wordpress edges for almost 2 years now. I think the subject is typically too sensitive and uncomfortable for WordPress to address, in the way of posting Spectrum/Autism related blogs to the Front Page. Which upsets me…

Indeed, they wait untill the official blog of Autism Speaks has something they bother to publish.

Oh, well. Many of us on the Spectrum are so used to being ignored. This does not lessen our fury about that!

I have just begun to post simple affirmations with positive follow-ups, a way to strengthen those of any age, or their caretakers, living with autism. My site is so quiet, I invite someof you to dtrop by and please comment…how else will I know what others are thinking?

Wow – loved this entry! I have a son who is High Functioning Autistic and a daughter who does not have those challenges. Early on I had the feeling her accomplishments could go un-noticed and that her needs could be unintentionally put on the back burner. Thank you for giving her a voice… she’s only 5, but i’m sure when she starts to understand a little bit better she’ll realize that she’s not alone – I sincerely thank you for that :)

I think you really just summed it all up. As someone else said, I really liked how through out the whole post – there wasnt a whole lot about how YOU felt about your brother, but the ending line sums everything up. I hope you both realize how lucky you are to have each other. Well done.

My little (well, 18-year-old) brother recently discovered, “How’s it goin’?” as well. We siblings of people with autism get good at recognizing the not-so-dramatic ways they attempt to reach out to us. It’s nice to know my appreciation is shared.

Thank you for sharing your heart. I have a son with High Functioning Autism and frustration and jealousy are definitely emotions he deals with constantly. Once he told me, “You’re lucky, Mom. You might be paralyzed but you can feel the peace of God.” I pray that he and all of the kids who deal with autism, find peace.

Well written Andy. I enjoyed reading your perspective. You kept it interesting, there was a quick version of your life and you brought it together nicely at the end.

It is interesting to me how we can live our lives with a lessons right under our noses, and we don’t see it until we are ready to see it. Everyone needs a little acceptance and compassion, but not all of us know how to show it or ask for it.
You were meant to write that blog post.Thank you.

I have two daughters. The younger has become the older, too. My oldest is autistic, but has a hearing impairment as well as cognitive impairments. The scenario is pretty much the same. The driving thing was an issue for us, too. We were fortunate enough (if you want to call it that) to be able to pull the “hearing” card. We explained to our older daughter that you have to be able to hear well to drive. That sufficed enough until the phase passed. College and living independently are the current woos. But through it all I would not trade my daughters for the world. I think my youngest would agree that her sister is one of the best things that has happened to her. Thanks for your inspirational story. :D

That is soooo sweet, what a lovely brother you are to say that he is one of the best things that happened to you. I also have an Austic Brother, he can not talk and rarely communicates but I still love him. I also have an aspergus brother, your posts reminds me of him.

I loved the end of this post, I think it’s wonderful having a sibling and you do end up just being very lucky to have them. I’m sure that any milestones you can get you’ll take, and in the end, he loves you very much and you love him very much too. It’s just sometimes those people you are closet to can have a funny way of showing it.

Thank you for sharing your experience. My son is 15 and autistic.For now, he is content to allow us to drive him around. He does offer helpful advice, though. “Red stop. Red stop. Green go. Green go.” Yellow must be too ambiguous. It never even get’s mentioned. :)

i wished any one of my two nephews, two years apart, is autistic, then maybe they will have much better relationship.. they are normal not-in-speaking-term brothers since i can remember… they hit each other, they dont talk respectfully to each other.. it hurts their mom as well as all we who love them… they have an autistic little sister… and she is very timid,, very sweet girl… sumtimes, you’d think, being a person with special need could be much better than one who has got everything except forgiving heart to his brother/sister… your story inspired me as well as made me sadder for my two nephews.. but as long as there’s life, there’s hope… :)

I really enjoyed reading this post. My brother has autism and I don’t know a lot of other people who understand what it’s like to know somebody with autism. It’s really good that you’re writing about this – I can see by this long list of comments that it’s touched a lot of people.

Wow, i read this, and thought how your older brother Matthew must feel about you is most likely how my older autistic sister felt about myself and our much older sister, this really has opened my eyes. I am going to share this to a couple of parent friends of mine who have autistic children with non autistic siblings.

I am glad things are getting better between you as brothers, well done for getting on Freshly Pressed. xx

This really touched me. My younger brother – also Matthew – was born when I was 9 and my sister was 6, and he has autism. I think because of the age gap, we were always guilty of babying him, and I suppose to an extent we always will, even now he’s 15 and taller than us! It’s interesting to hear about your different perspective being the younger sibling.

Because Matt’s severely autistic and has limited speech, I don’t think he’s too aware of his differences, which is perhaps a blessing. All I know is that he really relies on all of us, and loves us as much as he can do. Your last line is so perfect and rings true – I hope Matt knows one day the joy he’s brought to our family.

This is an amazing post. I can understand that at times it must have been difficult for you growing up, but I’m glad that no matter what happends you still love your brother.
Thanks for this post. Sometimes you never know what you got till its gone.

Thats a very emotional story, and one very hard to live through especially if you dont understand autism. patience is essential. I have a 4 yr old son who was diagnosed with autism in jan, and only on weds was also diagnosed with fragile x syndrome which is a cause of autism too.

How lucky your brother is to have a brother who doesnt give up when it would be so easy to.

What a wonderful insight into sucha powerful condition. Many of us do not really understand its depth until it touches us in a member of our family or a close friend. My daughter works closely with autistic children and has been able to bless us with much needed awareness. Thank you for sharing.

I must admit that until I had the opportunity to interview Lauren Henry (With a Brush of Love: Children With Autism and Special Needs), I did not truly appreciate or understand autism beyond the 1979 film titled “Son-Rise: A Miracle of Love.

Thanks for sharing. I have a nephew with Aspergers. My gown son was diagnosed with ADHD as a kid but I have my doubts since he shares many of the same symptoms with his cousin. Good luck, Andy and Matthew!

I loved this post…. It moved me to tears. My younger and only brother has down syndrome and though, our relationship is nothing like yours with your brother, it’s difficult for me too. Me and my bro couldn’t be more attached. When we go out together, we’re always hugging and just being really affectionate to/with each other and sometimes people look at him weirdly, specially kids and sometimes even some friends of mine. Over the years, I’ve learned to not care about what other people say or think about my bro. He’s a huge blessing and I love him just the way he is. Take care!

God Bless you, Matthew and your family. It sounds like you are handling the situation well and things like this will make you stronger as you seem to be! Good luck in the future on this trail and people with the same issue are lucky to have you speaking out!

That was extremely heart warming and honest. My boyfriend works with mentally and physically disabled children and I hear about the struggles all the time, but when break throughs happen you need to count them for all they are worth. You are very patient and strong. Thank you for sharing!

Beautifully put Andy. I have someone close to me whose little brother has high-functioning autism and from the outside I can see alot of jealously and insecurities. It’s great you are so aware of yourself, your brother and are trying to work through it all. Best of luck in the future, he’s lucky to have you. Congrat on being freshly pressed too btw!

Beautifully put Andy. I have someone close to me whose little brother has high-functioning autism and from the outside I can see alot of jealously and insecurities. It’s great you are so aware of yourself, your brother and are trying to work through it all. Best of luck in the future, he’s lucky to have you. Congrats on being freshly pressed too btw!

One doctor began this nonsense, and which has now been confirmed by hundreds of specialists, that his conclusions were unfounded, and insignificantly researched. His reports and research has been quashed to amazing standards. Read beyond something that gives you someone to blame. ASD is a genetic condition. Do something constructive instead of targeting the immunisation system.

I find myself very concerned by this post. Firstly, how can a post be titled “Voices of Autism” when the voice is not of somebody autistic? Secondly, I am autistic and I feel luckier than any neurotypical person to be able to call myself such. Sure, I struggle socially, but instead of seeking pity from those around me, I have learned to get around many of my problems with the help and support (NOT pity!) from my loved ones. Besides, who doesn’t have a few social issues? The benefits of being autistic in my eyes far outweigh the downsides. I am able to look at the world with a different view than anybody else and I am proud of my individuality. To pity me is to insult my source of pride. Temple Grandin once said “I am different, not less,” and I think that holds true of any autistic individual.

There was no pity neither requested, or given from this entry. Sharing emotions from one person’s perspective to the world about ASD is an educational experience, and personal journey. I am so happy to hear of your successes in the world, but stop thinking those of us with a “normal” body, pity those of you without. Its compassion and teaching tolerance….and we should have it for each other in this world despite our differences, and frankly “for” our differences too. Continue to teach others about yourself because autism awareness is not high enough, and don’t mistake their interest as pity for you. Good luck.

Wow! I’m in tears. This is exactly what I’m going through right now with my sons. Austin just turned 13 and he’s is very jealous of his little brother Josh who is 2 years younger. Austin has Pervasive Developmental Disorder, and is high functioning on the spectrum. Josh was out-talking Austin when he was 2 and Austin was 4. Austin still struggles with speech and language, and social skills, but he’s progressing gradually. Josh is smart and compliant, and makes friends easily. He’s a great younger brother to Austin, but Austin wants to make sure that Josh knows he’s the younger brother, so he teases him and takes things from him all the time. Austin started talking about getting a car and driving the other day, and I didn’t have the heart to tell him that he might not be able to at 16. Josh will probably be driving before Austin, and we’ll have to cross that bridge soon. I know that Austin loves Josh, even though he’s jealous of him sometimes, and I’m sure that Matthew loves you too Andy, even though he doesn’t know how to express it! Andy, Thanks for sharing your story!

A wonderful, heartfelt post! My two oldest sons have high-functioning autism, and you’ve given me things to ponder as they grow closer to adulthood. I have no clue who will be able to do what first, if at all, and how that will affect their relationship with each other and their younger sister. Thanks for sharing your perspective and for being so understanding and full of love for your brother. That truly touched my heart.

Andy, I know your brother through a record store I used to work at on the Central Coast that he likes to visit. I’m very happy to know more about him, and his life. I see people like Matthew all the time–those affected with various developmental disorders–and it becomes easy to forget that behind that person is a whole family of people who love them, but have also had to learn how to deal with people in a way that most of us never will. Thank you very much for sharing.

I felt your sincerity and for the first time I thought about my 9 year old typical son and his feelings dealing with a younger autistic brother. I burst into tears thinking of all the things they would not enjoy together. Then, thankfully you renewed me with a small glimpse of hope by sharing your experience of the walk to the store. Thank you for your honesty.

I am Alec’s mom. He is such a beautiful, kind, insightful little boy and brother. As life has dealt him this set of challenges and opportunities, he has become usually mature for his age. He loves his brother dearly, but the violence and chaos takes its toll. He would love to find a group of siblings with whom he can share his frustrations, anger, disappointment about not having a “normal” family. We live in New Haven, CT. If anyone knows of a “talking” sib group, conference or any other venue for sibs, we would be very appreciative. He has gotten so much from being able to respond to your story in his own words. Thank you.

P.S. Alec wants me to tell you that his brother can also be very kind and loving brother.

This piece brought tears to my eyes. I’m 46 and my autistic brother is 45. We have a younger sister 42 and growing up he refused to listen to her because she was the youngest. It is still the same because she is so bossy but like Andy said the best thing that has happened to us is Jim our brother. Thank you so much for sharing

Touching, I know a few people with Autism. It’s sad, but sometimes I think they have an advantage over other. Most of them are quite smart intellectually. I remember the story about the Kid that scored the winning basket for his team. I was amazing. Thanks andy I share this story with friends

To Andy, Your situation is very similar to mine, but I am the mother. I have two boys, the older of which is autistic. It worries me significantly at times, about what will happen to my eldest, should something happen to me one day, and if my youngest doesn’t see “the big picture” with his autistic brother. Thank you for sharing your story. It helps me, and from the feedback left above, it has helped many others too. Remember this, if nothing else from this experience of yours,…Its maybe not that he doesn’t “like” you, autistic people don’t show emotions well, despite the environment. If there’s something I’ve noticed in my autistic son, its that he does feel emotions, but they come out very wrong. He trusts you enough, and in my opinion, if you don’t have trust, there’s no way you can have any other feelings, like love or admiration. You are a great brother. Good luck in your life’s endeavours. Having a special-needs brother has brought compassion into your life that few others will ever have the pleasure of experiencing. Best Wishes, L Campbell, Qld, Australia.